Showing posts with label FEC6. Show all posts
Showing posts with label FEC6. Show all posts

Monday, April 8, 2013

Take a look at me now...


Day 120

General status update
FEC cycle 6, day 5

Anxiety level/insane euphoria (+/- 1-10,000): we haven’t hit insane euphoria again, which is very sad, because I LOVED being manic, but the mental energy from the Dexys has at least kicked in and made itself useful.

Fatigue/weakness: physically, still immeasurable; mentally, not so much now.

Pain in left arm: considerable – a nasty little souvenir from those last 3 doses of FEC which went straight into the vein, and not the PICC line. It’s also painful to extend my arm out straight. Deeply hoping all this is going to go away before I start swimming again in 2 weeks’ time.

Nausea demon: he woke me up at 6am this morning, and is fighting on to the bitter end, but soon he will be gone gone GONE.

Chemo Muse: she’s had me had at it today, despite the fatigue – there’s quite a lot of stuff she still wants to say before it’s time for her to depart.

Despair Demon: brooding in the airing cupboard again. I wish he wouldn’t keep messing up all the clean towels.

Chemo Brian: he’s been trying to persuade me to go and see Yoko Ono and the Plastic Ono Band at the Royal Festival Hall in June, having fond memories of her and John in their ineffably inane naked protest days. NO, a thousand times NO! I’m sorry, Brian, but there are some things life is definitely too short for, and Yoko Ono is one of them.

State of mind: this is the LAST TIME, this is the LAST TIME, this is the last TIME.

Hair: I look like a shaggy dog now, I really do. BUT I HAVE HAIR.



I haven’t been talking much about my breast, which is odd, really, given that this whole saga started the day I discovered it was trying to kill me.

No, that’s unfair.

It wasn’t my breast that that trying to kill me, it was the unwelcome invader that had taken up residence in my breast, my tumour, Mr Collins; the greedy empire-builder who had crept in unnoticed, set up base camp in my ductal tissue and was now looking to colonise my bones, my brain and my liver, given half a chance.

But my right breast is where Mr Collins chose to establish himself, and from the day I was diagnosed with cancer until after the operation to remove the tumour, it felt as if I was walking round with an unexploded bomb strapped to my chest.

We were not on good terms.

After the operation, the alienation from my breast continues in quite a different way; it becomes a source of both public and private humiliation. One of the things you have to get used to very quickly as a breast cancer patient is having to take your top off so that strange men (not always men, but in my case it usually is) can examine, manipulate and perform procedures on your breast.

I’ve just counted up the list of people who have spent time with my breast over the last seven months: the locum at my GP, the 2 consultant breast surgeons, Mr G and Mr H,  Mr H’s 3 acolytes (all male); and the mammographer and ultrasound doctor (female). All of these people treat me and my breast with decency and respect, and I have absolutely no complaints about their behaviour; the difficulty is more of a psychological one, arising during the regular check-ups I am given during the weeks following my lumpectomy operation.

At the Breast Care Clinic at Charing Cross Hospital, the consulting room used by Mr H is very small; there’s barely room for a desk, a few chairs, and the bed behind a curtain where you disrobe for examination. When I am there with Mr H and R, that’s as many people as the room can comfortably take. If you add in Mr H’s registrar, a junior doctor, and a medical student, then the room starts to feel very crowded indeed: me and five men, in front of whom I have to display my breasts, one naked and normal, the other recently mutilated.

I don’t like it at all.

In the weeks after the operation, my breast heals well; the spectacular black and blue colouring (black from bruising, blue from the dye) is an irrelevance and the only problems are in the first week, a slight build-up of fluid (seroma) in the place where the tumour was, which is painlessly aspirated with a needle by the junior doctor, and by the second week a hardness, an unyielding quality to the flesh in the same place, which Mr H assures me is perfectly normal, and will disappear in time (it did). The stitches, which are all around my nipple, are made with self-dissolving sutures, and so do not have to be removed; they gradually begin to remove themselves.

All is well, all is going according to plan.

By the time it comes to the third check-up, though, I am also having to deal with the high likelihood that I am going to have to undergo chemotherapy, and am both distressed and emotional, and it all just becomes too much. At this appointment I am accompanied by my sister, but she is away fetching coffee when I am called into the consulting room, where I sit down with Mr H and, as the registrar, the junior doctor and the medical student also crowd themselves into the room, I think ‘No – I really cannot STAND this’.

So I just say, quietly, ‘I’m sorry, but there are too many people in this room’ and immediately and without question the registrar removes himself, the junior doctor and the medical student, which is not good for medical education, but saves me from breaking down in public.

I should add that my permission was asked at the outset for other doctors to be present at consultations, and I agreed; Charing Cross is a teaching hospital, and doctors need to be taught. I just had no way of knowing in advance how difficult I would find it to be half-naked, and examined by several male doctors in such a very small space. Maybe if one of the doctors had been female, or we’d been in a larger room, it wouldn’t have made me quite so distressed and uncomfortable.

At home I just try to ignore my breast altogether, keep it covered with soft camisole tops and tell myself that I am leaving it alone to heal, but that’s not really it: I don’t want to look at it, and I certainly don’t want R to look at it. I can’t bear this new bit of reality just yet.

It’s tricky, though, in the bathroom each morning when I take my shower, but with looking away when I’m applying soap, and big enough towels, and assiduous not looking in the mirror, I can contrive to get through my ablutions without really looking at my breast.

Until the day I when I do.

Towards the end of October, nearly a month after Mr H removed the tumour, the bruising has almost gone, and I get out of the shower, dry myself off, wrap the bath towel around my waist and stand in front of the mirror, looking at my breasts, full-on, naked. This is the first time I have done this since the operation.

The breast is still the same size and shape as it was before but the operation has had the promised effect of lifting it, so that the nipple is a little higher up, although the difference is not enormous.

What is different is the livid line of stitching that outlines the areola of the nipple, making it look much larger than before, and quite different from the other breast. My breast looks as if it has been sewn together from two different parts. It reminds me of….

Last autumn in London there were newspaper adverts and bus stop posters everywhere for a film by Tim Burton called Frankenweenie, about a boy who conducts a science experiment to bring his beloved dog Sparky back to life, with monstrous consequences, a la Frankenstein; the adverts and posters all featured a striking image of the poor dog, very clumsily stitched back together, and this is the first thing that comes into my mind as I stand there in the bathroom and look at my cut-open and stitched-back together breast.



Something breaks inside me at this moment of looking properly at my breast for the first time, and I stand there with tears pouring down my face, sobbing uncontrollably. I must be making a lot of noise because R immediately calls through the bathroom door ‘Caroline! What it is, what’s the matter?’ I open the door without covering myself up and he, too, sees my breast for the first time as I point to it and howl 

‘Look what they’ve done to me, it’s horrible, it’s a FRANKENBREAST’.

I am completely beside myself, and R puts his arms round me, holds me close, strokes my hair and calms me down.

‘It isn’t going to stay like that,’ he says ‘it ISN’T GOING TO STAY LIKE THAT. Remember what Mr H said – the scarring will gradually fade, and by a year after the operation, you will barely be able to see anything at all. Your breast will look pretty much like it did before.’

Rationally, I know this, that it will get better, but all I can see now, as I look at it properly for the first time, is the mutilation of my once beautiful breast, one of the things about me that R particularly appreciated.

And this is a special part of the horror that awaits women who get breast cancer: not only the threat of death, which is bad enough, but the fear that the treatment will mutilate you so badly that no one will ever look at you with desire again, if you’re single, or the fear that your partner, if you have one, will turn his eyes away from you, unable to hide his repulsion, that he will never want to touch you again. If you can’t even bear to look at yourself, what kind of reaction can you expect from anyone else?

‘You’re still you’ says R ‘and your breast will be fine, it’s just being mended. The operation has saved your life, and your breast will get better again. And this means you will stay alive, and we will grow old together, as planned.’

Then he kisses it, and me, better.

R is really, really good at that.


*     *     *

 Postscript: that day was nearly six months ago now and, as Mr H has promised, the scars have faded a great deal, and the ‘stitching’ effect has gone. Mr H is an excellent surgeon, and my breast is looking relatively normal again. I no longer become distressed when I look at it in the mirror.

In a way, I feel guilty for even writing about this, because I know that I am very lucky to have kept my breast: so many women lose their breast, or both breasts, entirely, and have to suffer far worse things than I have had to.

 But I can only tell my own story, truthfully, and this is how it was. 





Sunday, April 7, 2013

No surrender


Day 119

General status update
FEC cycle 6, day 4

Fatigue/weakness: too weak now to do anything, much. It’s BAD. It will pass. This is the LAST TIME.

Anxiety level/insane euphoria (+/- 1-10,000): for the first time the fatigue is stronger than the Dexys. Insane euphoria sadly absent.

Nausea demon: our early morning meds and breakfast assignations are taking on something of an elegaic quality – both he and I know that we only have about another week together.

Chemo Muse: she’s waiting impatiently for the fatigue to stop trumping the Dexys, and amusing herself with the Despair Demon in the interim. Poor besotted fool.

Chemo Brian: on reflection, I think I’d rather like to keep him, and given that the after-effects of chemo may go on for the next 3-6 months, I don’t see why I shouldn’t.

State of mind: will be a lot better after this week is over – I’m not finished with FEC until FEC has finished with me.

Hair: Well, I’ve had the final dose of chemo and it still hasn’t fallen out – who would have thought it? It’s thin, it’s tatty, but it’s still pretty much all there, whichs has been a matter of wonder and amazement to all, and a huge stroke of good fortune for me. I can’t gloat about it, though, knowing the huge grief that losing their hair has caused to my Sisters in Chemo; it really is like being kicked when you’re already on the floor. 
  

It’s so close to the end now, but it’s still so hard – FEC doesn’t want to let me go just yet.

I’m so weak that the slightest physical exertion, and I mean the slightest, exhausts me, and I have to sit down and rest. My legs feel like jelly, and the bottom half of my left arm hurts quite badly inside from the toxicity of the chemotherapy drugs that were pumped into me on Thursday. The nausea and stomach pains are perhaps at 40% of the level of the earlier cycles, now the meds have been sorted, and with extra steroids to boot, but it's still extremely unpleasant.

It’s day 4 and today and the next few days are the worst, so I just have to grit my teeth and bear it, keep reminding myself that is the last time, THE LAST TIME, that 3 weeks from now I will not be entering another chemo cycle, I will simply be getting better and stronger.

Soon I will be swimming again, gliding through the water, the cool silky water, free from the PICC line, free from the needles, free from the poison, free from the chemical prison.

I just have to get through this week of feeling terrible, and the following week of having no immune system, and then I can get back in the pool. My greatest fear, right now, is of anything happening to stop that.

I am desperate to get back in that pool, and I will.

There will be no retreat, no surrender.






Tuesday, April 2, 2013

Calling all Überneutrophils…


Day 114 

General status update

Fatigue/weakness: I’m so weak now I just want to lie down on the sofa with Chemo Brian and stay there – I may have to get a taxi to the hospital in the morning because I’m not sure I can manage the walk.

Anxiety level/insane euphoria (+/- 1-10,000): sudden leap in anxiety level with the realisation that if they postpone the chemo on Thursday, I won’t be getting the Dexys and concomitant insane euphoria for 7 more days. It’s not that I’m addicted, but I’m so feeble I could really do with a bit of that mad Dexy rush right now...

Nausea demon: back from his monastic retreat, which he apparently found very spiritually uplifting – maybe he’ll convert and become an ex-Chemo Demon. I wonder if they’re allowed to do that, or if Chemo Demon apostasy is punished with…. how would you punish an apostate Chemo Demon? Sending him to hell wouldn’t really be much of a threat, would it?

Despair Demon: I’ve been finding him rather trying in the last couple of days, as his constant conjuring up of the worst possible outcomes is seriously morale-lowering, especially when you’re feeling very weak. So I had a quick word with the Chemo Muse, pointing out that her ex-boyfriend is messing with my head and my motivation, and asked her to intervene. She said no problem, and simply shook her snaky locks in his direction, which had him immediately transfixed in the manner of a mongoose in the presence of a King Cobra. Then she allowed him to take her to Starbucks for an Espresso Macchiato, and I got a little peace and quiet.

State of mind: The fear of not having chemo on Thursday is nowmuch  greater than the dread of having chemo on Thursday. Go figure.

Hair: currently non-combatant.


Today I have been mainlining pomegranate juice, in the hope that its fruity vitamin-dense crimson goodness will perk up my neutrophils, as well as channelling Nietzsche in the hope of willing them on to power so that I will be strong enough to have my sixth and last dose of FEC on Thursday.

Pomegranate–fuelled Überneutrophils, that’s what we need right now…

I have to be at the hospital at 8.45 tomorrow morning for Matron Becky to do my bloods so that they will be processed in time for my pre-chemo meeting with the oncologist, whichever oncologist it happens to be, consultant or registrar; you never get to know this in advance, which is quite annoying. With the surgeon you always get to see the surgeon himself, however many acolytes he may have in attendance, and can plan questions/conversations accordingly, but getting to see a consultant oncologist seems to be much like being granted an audience with the Pope – it doesn’t happen very often, and there’s no predicting when.

Tomorrow everything will depend on the wretched neutrophils: if they’re below the cut-off point of 1.5, which means 1,500 cells per microliter (= cubic millilitre) of blood, then I will not be allowed to have FEC6, however much I beg and/or whine, because they really don’t want my 6 inglorious cycles of chemo to end up with a FEC-related fatality giving the lie to the infamous ‘FEC is well-tolerated’ oncological motto.

I was discussing the phrase ‘well-tolerated’ with my Cyber Chemo Buddy Cressida, a veteran of two different courses of chemo, the other day - she has also endured Taxotere, FEC’s even nastier evil twin, which turns your nails black and makes the skin on your toes and fingertips blister and burn before dropping off, which serves at least to distract you from the constant agonising joint pain - and she said that what ‘well-tolerated’ REALLY means is ‘doesn’t actually kill you’, which is the only outcome oncologists are really interested in.

We then talked wistfully, not for the first time, of how much better it would be if all oncologists had to experience a small dose of chemo themselves as part of their training. I did once suggest this to Stan, my late-lamented first oncology registrar who has now rotated off to pastures new, and he looked at me with an expression of absolute horror:

‘We couldn’t do that’ he said ‘it’s poisonous.’

Please keep your fingers crossed for me and send positive vibes – or, better still, threatening messages – to my indolent neutrophils tonight; if they don’t do their stuff tomorrow morning it’s going to mean yet another week incarcerated in the chemical prison, waiting for parole…



Saturday, March 30, 2013

Primum non nocere


Day 111  

General status update

Fatigue/weakness: Immense. All-enveloping.

Eyes: it’s a good thing I know this vision problem is a chemo side effect, because otherwise I’d be thinking that I was starting to go blind.

Anxiety level/insane euphoria (+/- 1-10,000): far too tired to be anxious, and the euphoria waits on Thursday’s Dexy delivery.

Nausea demon: Away. With the Benedictine monks at Worth Abbey. Learning how to do Gregorian chant. Allegedly. By strange coincidence, StepSisFo (Major) told me today that she said a prayer for me in Worth Abbey recently, which is excellent news. I’m all for the praying and the ‘holding in the light’ - ALL orisons, of whatever nature, very gratefully received here in Trying To Avoid Death Central.

Despair Demon: now well and truly sunk into his very own Slough of Despond, which is a bit of a turn up for the book, given his particular line of work. I’m sworn to secrecy on this as far as the other Chemo Demons are concerned, because he fears losing all professional credibility should it become known that he is, er, depressed. I’ve suggested Prozac, and he’s thinking about it.

Chemo Muse: given my current state of debility, she’s eased off a bit and is letting me do fairly short blog posts at the moment, but only on the understanding that as soon as we get some more steroids it will be all systems go again.

Chemo Brian: his Siren call from the sofa is constantly in my ears - just give me 5 more minutes to finish this, Brian, and I’m there.

State of mind: much like Shackleton towards the end of the Endurance expedition, I imagine. Not long to go now…

Hair: fomenting revolt amongst the follicles in protest against its lack of maintenance– don’t get too cocky, Hair: I could always choose NOT to deep-freeze my skull in screaming agony with the Cold Cap for the last dose of FEC, and then where would you be? In a pile on the floor within 10 days, that’s where, so watch it.



Primum non nocere - ‘first, do no harm’ – is one of the basic principles of medical ethics, instilled into doctors at medical school; it is meant to remind them that, given any particular medical problem, it is sometimes better not to do something, or to do nothing, rather than risk causing more harm than good. It reminds doctors that they must consider the possible harm that any intervention might do, especially interventions that carry an obvious risk of harm but a less certain chance of benefit.

The harm that medical interventions can do is much on my mind today because at the moment I’m very weak, my brain is fuzzy and my vision is blurred, and sitting at the computer to write is really quite hard to do. Going for a walk, which I tried to do this afternoon, was more of a challenge still; my legs feel floppy and rubbery, my whole body is suffused with weakness, and this is what the chemo has done to me, not the cancer.

Chemotherapy treatment is designed to do you harm: it can only kill the cancer if it’s also nearly strong enough to kill the patient who is incubating the disease, and it only works if you have repeated doses over an extended period of time, the time in between each dose being the minimum compatible with patient survival.  So for the last four months, and five doses of chemo, it has all been about my recovering sufficiently after each dose of poison simply in order to be strong enough to survive being poisoned again.

Think about that, Dear Reader: all this business with the neutrophils, and making sure that the immune system has recovered each time – it’s all directed at making sure that the next dose of poison won’t actually kill you, and it’s a very fine line they draw. I will be so, so glad after the final dose of poison on Thursday to know that from that point onwards the toxins will gradually start leaving my body for good.

After Thursday, I won’t be just getting strong enough to be poisoned again: every day will mean a little less poison in my body, and this time it won’t be replaced. There will be the usual two weeks of nasty side effects, but after that I will be on the way to becoming strong, healthy and poison-free again. I will be getting strong enough to resume my life again, outside this chemical prison of the last 4 months; an invisible prison, but a prison nevertheless.

So, I’ve just got to get through another four days of this weakness, praying I’m going to be strong enough by Thursday to be poisoned again for the sixth and final time.

At last, FEC6.

Bring it on…